A Mother’s Fight: Heather’s Journey with Leptomeningeal Disease
When Heather was diagnosed with stage 4 metastatic breast cancer in December 2022, her world shifted in an instant. As a young mother, she wasn't only fighting for her own life—she was fighting for more moments with her child. Determined to seek the best possible care, Heather turned to Moffitt Cancer Center. There, her treatment began quickly and with urgency.
Her initial therapy brought hope as the cancer responded well. But that hope was soon tested when she received devastating news: the cancer had spread to her brain and spinal fluid, a rare and aggressive condition known as leptomeningeal disease (LMD). Approximately 10% to 15% of women with stage 4 breast cancer develop brain metastases, but LMD is even more severe; patients typically survive just two to three months.
Heather needed a team that could move fast, and Moffitt did. Her doctors crafted a comprehensive plan that included surgery and enrollment in two groundbreaking clinical trials. She became one of the first patients in the world to participate in a dendritic cell vaccine (DCV) trial—an innovative immunotherapy designed to teach the immune system how to recognize and destroy cancer cells. This trial combined DCV with chemokine modulation therapy to target HER2/HER3 proteins on breast cancer cells. Moffitt was one of the first centers to launch this study, offering hope where options were scarce.
“I was told I'm only the second patient in the world to complete the 18-week trial,” Heather said. The treatment came with long, difficult days. “There were times I'd lie in a dark room for hours with my eyes closed—just trying to gather the strength to be a mother again.”
When signs of cancer progression appeared, Heather’s care team acted quickly again, enrolling her in a second clinical trial: a Phase I/II study exploring the use of radiation therapy followed by intrathecal delivery of Trastuzumab and Pertuzumab. This approach—combining precision-targeted drugs with direct administration to the spinal fluid—offered a new avenue of hope for patients with HER2+ breast cancer that had spread to the leptomeninges.
Now, more than 19 months after her LMD diagnosis—a milestone few with her condition reach—Heather has no evidence of disease. While her journey is far from over, she continues forward with strength and gratitude.
“Dr. (Peter) Forsyth tells me I inspire him,” Heather says, “but it's his team that has given me this gift of time.”
By sharing her story, Heather hopes others will know: no matter the diagnosis, there is hope—and at Moffitt, there is always a plan.
